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1 hat orks KPMG GlOBAL HEALTHCARE Creating new value with patients, carers and communities KPMG International kpmg.com/healthcare

2 2 Creating new value with patients, carers and communities Introduction Over the last two decades many industries have changed their value proposition by developing their customers capacity to create value. Healthcare is only just understanding how this might transform its own value proposition. Healthcare has missed out mainly because it has seen patient involvement in their own care as a moral rather than an economic issue. Globally some parts of healthcare are beginning to make the changes that will involve patients, carers and their communities more fully in their own healthcare. Here, using our experience across the world, we outline the answers that you need to develop to fully realize the value inherent in better patient involvement and communities to improve care.

3 Creating new value with patients, carers and communities 3 Payers, providers and other health and life sciences organizations that want to transform, need to rethink the way they engage with patients. This is the case in the conduct of research, in the offer made to patients and in the design of services. In many cases, the alignment between what patients want and what is provided is poor. The goals of patients are not given enough recognition in treatment choices, and the benefits of shared decision making and patient and carer involvement are not being realized. As a result, over diagnosis and over treatment are now a frequent hazard and a serious cost in many parts of the world. Communities can also offer much more and can add value to healthcare. In research, the knowledge that patients have is not being used and payers are only just starting to realize the opportunities of harnessing patient power to put pressure on costs, to improve lifestyles and drive quality. Over the last two decades, many other industries and services have used their customers to strongly improve their value proposition. In retail banking, communications and retail, customers now routinely deliver value that had previously been delivered by paid staff. Given the economics of the industry, healthcare leaders recognize that it is time for the healthcare industry to change in their value proposition. Here we demonstrate that a further change in the value proposition for healthcare will occur when the industry recognizes the efficacy of extending its work from healthcare to health and well-being. Delaying the onset of long term conditions into later old age will need very different interventions from traditional healthcare and will improve the value proposition for population health considerably. We report on original research carried out by KPMG to find out what patients organizations in different countries believed patients needed and how that compared with the health service they received. We use that research 1 throughout this document. Where we argue that if organizations want to involve patients in their own healthcare there are a number of tangible actions required. We will suggest answers to the following questions: 1. Is there work to create a new culture centered on the patient? 2. Is there patient and carer input into service design? 3. Are systems in place to support shared decision-making? 4. Does the model support self-care and help the professionals adapt to this? 5. Are the assets and capabilities of patients and carers recognized and mobilized? 6. Can patients get and use the information they need? 7. Are patients involved in teaching and research? 8. Are the assets that communities can contribute to healthcare being used effectively? 9. Are there measurement systems to support this? We look at each of these and the steps required to move forward. At the end we suggest a set of immediate and practical actions that flow from the answers to these questions. We also outline a maturity index (see page 20) which demonstrates how to self-assess your organization on each of these questions. Delaying the onset of long term conditions into later old age will need very different interventions from traditional healthcare and will improve the value proposition for population health considerably. 1. KPMG International carried out 27 interviews in USA, UK, Canada, Brazil, Hong Kong and the Netherlands with patient groups covering a range of different conditions

4 4 Creating new value with patients, carers and communities The use of the narrative story of a typical patient to give this somewhat abstract idea some concrete meaning is an effective way to align different parts of the organization. 1. Is there work to create a new culture centered on the patient? Creating a patient centered culture needs a recognition that patients, their carers and communities are different from each other. Therefore action in this area requires a sophisticated understanding of the different attitudes, The importance of segmentation desires and characteristics of different patient segments. That is why most customer facing industries recognize the importance of segmenting their population. Healthcare leaders recognize that Segmentation is a strategy that acknowledges and understands that one size does not fit all. Consumers vary widely in their preferences, what is meaningful, what choices they will make and how they want to access services. Segmentation is a tool that industry uses to categorize their consumer population into groups that define the groups experiences, needs or even demographic By segmenting consumers by preference or demographic information, companies are able to drive sales by personalizing products to meet the specialized needs of each consumer segment The complexity of healthcare systems is significant, unlike other sectors such as retail banking, travel, grocery or retail. However, segmentation tools focused on understanding value associated with experiences in health systems may offer an important strategy for health systems to achieve value. 2 having recognized the differences between segments of patients it is important that everyone from the leadership to clinical teams have goals that are aligned with creating high quality outcomes and experience for those segments of patients. Healthcare organizations will understand that that there will need to be continuous work to improve this. In many organizations, goals relate to the work of individuals or departments, not to the overall value streams that relate to the patient s journey. The use of the narrative story of a typical patient to give this somewhat abstract idea some concrete meaning is an effective way to align different parts of the organization. In Ryhow hospital an individual narrative around a patient Esther was used to mobilize change throughout the hospital. This has become so much a part of the whole story of the hospital that parts of the patient pathway are now named after her. Jönköping County Council and Ryhov Hospital, Sweden Jönköping s use of virtual patient Esther symbolizes the importance of care redesign focused on the needs and preferences of patients. In its initial development, the idea of Esther was used to focus discussions of system changes on patient needs. Esther coaches help to bring the patient perspective into daily practice. These coaches are primarily nursing assistants charged with helping their colleagues to stay focused on improving care to serve the need of patients. 2. Snowden Schnarr and Alessi. It s All About me : The Personalization of Health Systems Ivey Business School February 2014, page 6

5 Creating new value with patients, carers and communities 5 2. Is there patient and carer input into service design? In other customer facing industries such as communications, successful firms spend considerable resources to ensure that their product is designed around their customers experience. As the healthcare system shifts from volume to value, healthcare organizations will need to to ensure that patients and carers help to design services deliver better value. Involving patients and their carers in the design of services, in identifying priorities for change or for research and in understanding how they perceive different components of services will not just improve their experience but helps to remove non-value adding steps and improve efficiency. Using interviews, observations, diaries, stories and ethnography to supplement the standard methods to collect patient insight is important: having a culture willing to listen even more so. This is not simply a set of soft skills. If patients and their carers are allowed to input across the health and social care system, they will be in a position to create extra value for organizations in that system. Patient Groups across the world not only want to represent patients in designing healthcare for political reasons, but also have strong economic arguments for so doing. In some countries this is already happening and resources are being saved. In others they are on the verge of making this happen. UK If we really tried to get into the shoes of patients and tried to really understand them, understand about (their) experience and what they really want and need you would get a lot of added benefits. Safety would fall out. Money would fall out, because you stop doing non value-added things because people tell you what they actually want and don t want. So there are all sorts of added benefits 3, Dr Fran Woodard, Director for England, Macmillan Cancer Support. The Netherlands The Dutch Government is currently working on a number of pacts between different groups (insurers, patient groups, providers etc) as part of a major cost control exercise.they are designed to look at the benefits packages that are available to people and explore not just what s in them but how they can be used more effectively e.g. to prioritize preventative measures ahead of treatments. These pacts are demonstrating the cost benefit of involving patients in benefits package design 4, Petra Shout, Dutch Patients and Consumers Association, The Netherlands. Hong Kong We input about $10 billion US a year in to healthcare services in Hong Kong. But we still don t make best use of these resources. If the government decision-makers and the patients got together to think about how we can make best use of these resources it would be productive 5, King Pin Tsang, HKAPO, Hong Kong. 3 KPMG International, KPMG International, KPMG International, 2014

6 6 Creating new value with patients, carers and communities There is also growing concern that there is an increasing amount of overdiagnosis in which patients are over investigated and screened and may be harmed as a result. 3. Are systems in place to support shared decision-making? According to Professor Al Mulley of the Dartmouth Institute, there is a widespread failure by clinicians to properly understand the preferences of their patients and how the proposed interventions will affect their lives. 6 He calls this preference misdiagnosis which wastes resources and can harm patients. There is also growing concern that there is an increasing amount of over-diagnosis in which patients are over investigated and screened and may be harmed as a result. An informed patient that is aware of the risks may be less likely to agree to these procedures and as a result is more likely to get an outcome they will be content with. There are a number of advantages to this approach. Patients often make different decisions about their care when they are fully informed about their treatment options often more conservative and lower cost than those chosen by their physician. Developing the skills to involve patients in decision-making, training staff or developing health coaches, providing decision aids and documenting and tracking preferences are key competences. Our research on patient organizations showed that medical professionals would like to involve their patients but feel they did not have the time. not having the time to work with patients to reduce the demand for healthcare will almost certainly cost resources. A key area that is highlighted as one of the characteristics of low cost high quality organizations is that they spend time and care to help patients plan ahead including advanced planning for the end of life. This is an area where a large amount of high cost but often futile care is delivered because the appropriate conversations did not take place at the right time. The way in which healthcare organizations talk about whether patients take their medicines or not (the language of compliance or adherence) shows how little thought has been given to the patient as a consumer of services and medicines. UK What we really need is good multi-professional assessment of people, or more developed social prescriber models of care (e.g. adopting a wait and see approach to knee surgery to see if other social interventions might work just as well to achieve the desired end goal, at less cost and less pain to the individual) 7, Jeremy Taylor, National Voices, UK. The Royal College of General Practitioners in England have recognized that if patients are to take their drugs they need to be more involved in discussions with their GP about the drugs themselves. In 2009 they recommended new guidelines for involving patients in the prescribing of drugs. Medicine taking is a complex human behavior, and patients evaluate medicines and the risks and benefits of medicines according to the resources available to them. Unwanted and unused medicines reflect inadequate communication between professionals and patients about health problems and how they might be treated and about patients ongoing assessment and experience of treatment. This guidance will be of help to all professionals by providing guidance on how to involve patients in the decision to prescribe medicine and on how to support patients in their subsequent use of medicines It is thought that between a half and a third of all medicines prescribed for long term conditions are not taken as recommended Mulley A, Trimble C, Elwyn G. Patients Preferences Matter: stop the silent misdiagnosis. King s Fund KPMG International, Medicines adherence involving patients in decisions about prescribed medicines and supporting adherence published by the RCGP January 2009 England

7 Creating new value with patients, carers and communities 7 No consumer orientated industry would expect its consumers to comply with the industries wishes they would have an approach that recognized the power of the consumer over their own choices. This example of the Royal College of General Practitioners in England (previous page) shows how a doctor s organization can frame this argument and practice. 4. Does the model support self-care and help the professionals adapt to this? From our research 9 patient organizations recognized the cultural change that is necessary here. Having the ability to support patients in caring for themselves is increasingly going to be an organizational competence needed by all providers, payers and many life sciences companies. This includes a range of tools and techniques, for example: Encouraging healthy behaviors both through a focus on high risk behavior and longer term lifestyle change through direct support such as coaching, incentives and mechanisms such as text reminders. Supporting self-diagnosis and management through phone and web services, the use of retail pharmacy, community workers, etc. Helping patients make decisions and navigate the system through apps and decision aids, and care navigators. For most patients, for most of their illness, the person who spends the most time and effort caring for them are the patients themselves, their family or their carer. Patients are caring for themselves and their condition for about 5,800 waking hours, yet will spend less than 10 hours with a healthcare professional. Often the considerable resource contained in that time and effort does not provide as much return as it might because professionals have not recognized how they can invest their skills to improve its capacity. Other industries most of retail and most retail banking have recognized how some investment will make customers into co-producers of value, rather than simply a set of costs. In social care services users have been systemic coproducers of value for some time. This has transformed the way these industries work but healthcare has some way to go in understanding how much patients put into this co-production and how better investment from healthcare professionals in supporting patient self-care can improve the outcomes from this work. Even when some recognition is given to how much work patients carry out in their own self-care, very few healthcare organizations would for example invest any real training resource on patients when compared to their paid staff. US Doctors are still on a pedestal here in the US and many people, however brilliant and highly educated, will tend to defer to them. We need to help providers understand why it matters to listen to the patient. For example, some medics are more approachable and open minded about alternative therapies etc., but not all. It s still not generally accepted in the medical profession. But some patients feel these things help them, so doctors need to listen 10, Laura Windgate, Crohns and Colitis, US. UK Most GPs say they d love to do shared decision-making but they don t have the time. We need to think more carefully about how we can liberate people to do the right thing, to see that integrated care is better care, that it can help professionals and delivery organizations as well as patients 11, Jeremy Taylor, National Voices, UK 9. KPMG International, KPMG International, KPMG International, 2014

8 8 Creating new value with patients, carers and communities 5. Are the assets and capabilities of patients and carers recognized and mobilized? The growth in multimorbidity and chronic conditions requires a major shift in outlook from a focus on achieving biomedical indicators to one where the goals of the patient define success. Successful healthcare needs active rather than passive patients. In creating more active patients it will be necessary to not only work with medical issues but to include functional, social and psychological issues (see patient activation page 9). To develop active patients, healthcare organizations need to understand the assets that the patients family and carer possess that can be mobilized to better manage their healthcare. The development of new services that invest in the development of skills and capabilities of patients, their carers and communities to support selfmanagement is a challenge for traditional providers and payers. It may involve: New skills and job roles such as coaching and motivational interviewing New ways of engaging to identify patients assets and develop the different options available to them Social prescribing sign-posting patients to non-healthcare services, for example to reduce social isolation Incentives and new interventions to change behaviors including using social proof and insights from behavioral economics Remote monitoring using technology backed up with case managers Intensive intervention to support the vulnerable or chaotic patients Building and supporting peer networks so patients can provide mutual support. The emphasis in the discussion of this has tended to be about the technical capabilities to support self-care. The change in culture and in the practice of medicine that is implied by this is at least as significant. Simply adding technology to existing delivery models will not succeed. Goal oriented care One important issue for providers relates to what we believe to be the primary goal of the care delivered by a healthcare system. Patients can be caught in a clash between goal-oriented and problem-oriented perspectives. De Maeseneer describes the case of an older patient with osteoarthritis, hypertension, type 2 diabetes and chronic airways disease who articulated what mattered most: On Tuesdays and Thursdays I want to visit my friends and play cards with them. On Saturday I want to go to the supermarket with my daughter. Foremost, I just want peace. I don t want to continually change the therapy anymore, especially not having to do this and do that. A doctor focusing on solving clinical problems by titrating multiple medications to make the patient normotensive, reduce HbA1C to levels defined by national guidelines, and achieve lung function tests that are normal for age and body habitus will miss the point. The patient s goals are primarily cognitive clarity and a certain amount of mobility. Goal-oriented care is care that encourages each individual to achieve the highest level of health as defined by that individual. The majority of the tools help patients achieve their goals rather than solve physiologic problems. Hence providers who choose to mobilize these tools in pursuit of a strategy of patient engagement and promotion of self-care will have to first clarify their purpose for doing so and recognize the implied change in their goals as providers.

9 Creating new value with patients, carers and communities 9 Both self-care and shared decision making make demands on patients. In particular they require a greater degree of health literacy and to become activated patients. Goal orientated healthcare provides the healthcare organization with the capacity to work with patients to achieve their own life goals. This builds on the purely biomedical view of goals and will often gain impetus from the patients own greater motivation to achieve something that they want and can recognize. Patient activation Many studies have shown that patients who are activated i.e. have the skills, ability and willingness to manage their own health and healthcare have better health outcomes at lower costs compared with less activated patients. Judith Hibbard of the University of Oregon has developed a patient activation measure a validated survey that scores the degree to which patients see themselves as a manager of his or her health and care. Patients with the lowest activation scores, that is, people with the least skills and confidence to actively engage in their own healthcare, cost 8 to 21 percent more than patients with the highest activation levels, even after adjusting for health status and other factors. And patient activation scores were shown to be significant predictors of healthcare costs. 12 Predicted per capita costs of patients by patient activation level patient activation level Predicted per capita billed costs ($) Level 1 (lowest) 966** 1.21** Level Level Level 4 (highest) Ratio of predicted costs relative to level 4 Patient Activation Measure (PAM) The point of the patient activation measures is that patients can learn to become more active in working with their own healthcare. Healthcare organizations could work to ensure that every interaction that they have with their patients would include increasing the capacity to be active in their own healthcare. Our argument explores the different ways that this can be achieved, from involving patients in service design, to providing them with better relevant information and investing in the assets in the families and communities around them. The above statistics demonstrate the worth of doing investing in patients capacity to betters self manage. 12. Health Policy Brief: Patient Engagement, Health Affairs, February 14, Hibbard J H, Greene J, Overton V (2013) Patients with lower activation associated with higher costs; delivery systems should know their patients scores. Health Affairs, 32, no (2013): Notes: Authors analysis of Fairview Health Services billing and electronic health record data, Jan-Jun Inpatient and pharmacy costs were not included.

10 10 Creating new value with patients, carers and communities Often the clinical explanation is fine but it rarely helps to alleviate the fear and anxiety that comes with a diagnosis. Canada 6. Can patients get and use the information they need? Patients need information that is often very different from the information that doctors think they need. Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information. If patients don t receive what they need to know, they will not be able to be as active in their own care as we need them to be. Information for patients that they can use improves clinical effectiveness, safety and patient experience. It needs to adhere to quality standards, be user-tested, and to be useful it needs to be co-designed and co-produced. Information must also be designed to meet different levels of health literacy. It is now a basic requirement for organizations to have ways of communicating online and through mobile phone technology. Using clinically accredited apps to support chronic conditions and individual episodes of care, such as maternity care is the next step. To make full use of this, it will be important to improve health literacy and activation there is some evidence about how to do this. See below. Promising interventions for improving health literacy: 14 The biggest gap is information provision pretty much at every stage of the pathway, but particularly at point of diagnosis. Specialists rarely spend more than 15 minutes with [patients] and that s never enough time to properly discuss implications, options etc. There s a big psychological gap between the information that the clinician thinks their patient needs and what they themselves say they need. Often the clinical explanation is fine but it rarely helps to alleviate the fear and anxiety that comes with a diagnosis. There s also a practical gap in information provision no-one at diagnosis goes into practical info about the financial situation both what it might mean from a work perspective and insurance/funding standpoint 15, Cathy Ammendolea and Niya Chari, Canadian Breast Cancer Network. Intervention Personalized patient information (paper and electronic) reinforced by professional or lay support Preoperative and predischarge information Telephone counseling and helplines Motivational interviewing Benefits Improvements in patients knowledge and understanding of their condition Increased sense of empowerment Greater ability to cope with the effects of illness Improved patient satisfaction May lead to improvements in health behavior May contribute to better health outcomes May lead to shorter length of stay and fewer follow-up visits May lead to shorter length of stay and fewer follow-up visits Less social isolation Improved self-efficacy and satisfaction Reduced mortality and fewer hospitalizations for some patient groups May improve diagnostic accuracy May contribute to improved health status and better quality of life Better adherence to treatment recommendations Improved health behaviors Reduced risk factors Improved health outcomes 14. See 15. KPMG International, 2014

11 Creating new value with patients, carers and communities 11 Emerging idea: Using serious games There is growing interest in using various types of games to engage patients differently. Computer games are forming an increasingly vibrant part of popular leisure culture. Games can encourage goal setting, support adherence to treatment, develop cognitive or motor skills, and provide education or support exercises, diet management and other forms of self-care. The use of applications on mobile phones or tablets greatly helps this. Some models introduce some element of collaboration and rivalry between groups of patients for example in rehabilitation or lifestyle change. Using games provides a different route to changing cognitive habits and behaviors than more conventional and passive interventions. 7. Are patients involved in teaching and research? Using patients to educate clinical professionals has potential to change the culture of the organization and decisions about treatment. They also are a potentially important contributor to clinical research. The Seventh Framework Programme (FP7), the European Union s current research-funding instrument, stresses 16 the importance of patient and public involvement. And the Patient-Centered Outcomes Research Institute in Washington DC has allocated US$68 million to a research network predicated on the principle that the interests of patients will be central to decisionmaking. 17 The opportunities for engaging patients in research are also being explored in a number of different ways by less conventional actors such as Shift MS which brings young people with multiple sclerosis together and PatientsLikeMe 18 a patient network where people connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, life sciences companies, purchasers and providers to develop more effective products, services and care. We know that research does not currently mirror the priorities that patients think are important and that there is limited evidence that patient views are really making an impact. In the process, they generate data about the real-world nature of disease that help researchers, life sciences companies, purchasers and providers to develop more effective products, services and care. Survivors Teaching Students USA The goal of Survivors Teaching Students is for future physicians, nurse practitioners, nurses and physician assistants to be able to diagnose the disease when it is in its earlier, most treatable stages. This program brings ovarian cancer survivors into the classroom, where they present their unique stories along with facts about the disease. Students are able to interact with and learn from actual patients. Survivors Teaching Students is offered in 82 medical schools, 7 nurse practitioner programs, 13 physician assistant programs, 50 nursing schools and 6 other allied health professional schools across 29 states in the USA. In 2012, the program educated 9,446 students, a 52 percent increase over the previous year European Commission. FP7 Cooperation Work Programme: Health 2013 (EC, 2012) Interventions mentioned in research priorities identified by James Lind Alliance patient clinician Priority Setting Partnerships and in registered trials,

12 But in a world in which patient value will increasingly become part of the decision-making process for spending and investment this will need to be dealt with. The example of Survivors Teaching Students (below) demonstrates a simple way in which patients can influence the education of medical professionals. Patient priorities vs research activity 20 Interventions (%) Education and training, service delivery, psychological interventions, physical interventions, exercise, complementary interventions, diet and other Radiotherapy, surgery and perioperative interventions, devices and diagnostic interventions Drugs, vaccines and biologicals James Lind Alliance patient-clinician Priority Setting Partnerships Registered non-commercial trials Registered commercial trials Source: How to increase value and reduce waste when research priorities are set Iain Chalmers DSc, Prof Michael B Bracken PhD, Prof Ben Djulbegovic PhD, Silvio Garattini MD, Jonathan Grant PhD, A Metin Gülmezoglu PhD, David W Howells PhD, Prof John P A Ioannidis MD, Sandy Oliver PhD 20. The Lancet, Volume 383, Issue 9912, Pages , 11 January 2014 Published Online: 08 January 2014

13 8. Are the assets that communities can contribute to healthcare being used effectively? The chronic care model developed by Ed Wagner and colleagues is the definitive description of how to deliver high quality care for people with chronic disease. The component that has tended to be most under developed has been that related to the engagement of the resources of the wider community. Healthcare tends to ask the question, what s the problem?, community development has a different mindset it asks, what are the assets we can use and build on? The resources of the community are free or at least very cheap and no one is exploited or made to do something they would rather not. Cultural sensitivity is important in many communities particularly in ensuring treatments are accepted and followed, and community engagement strategies greatly improve this. Building sustainable communities to support patients have huge additional spin offs and can also support strategies for recruiting and training local workers, economic development and other social programs. The Nuka healthcare system in Alaska provides a clear example of this approach. It recognizes that disease and its treatment as social, psychological and cultural components as well as the traditional bio-medical issues. The patient is treated as a customer and as an owner of their healthcare and their healthcare system and it infuses the healthcare system with the specific culture of this region. Any healthcare system can start down this path by first searching for the assets that exist in the community they work with and secondly by developing their healthcare services to work with and realize the value of those assets. This can only take place if the healthcare organization and its professional staff cede some power to those communities and the individuals in them. Our research into patients groups backs this up with a recognition that there is a clear gap in health systems understanding of community assets. The Netherlands The gap here is mainly around support structures and systems to help people live independently with their condition. A lot of patients tell [us] they want to manage their conditions at home and by and large home care is pretty good in clinical terms. What s lacking is a coordinated network of community facilities in the neighbourhood that patients can access when they want to, together with the support to help them navigate this system 21, Petra Shout, Dutch Patients and Consumers Association, The Netherlands 21. KPMG International, 2014

14 14 Creating new value with patients, carers and communities Southcentral Foundation Nuka System of Care, Anchorage, Alaska, USA Southcentral Foundation s (SCF) Nuka System of Care is an alternative approach to healthcare delivery. It is a relationshipbased system comprised of organizational strategies and processes; medical, behavioral, dental and traditional practices; and supporting infrastructure that strives to address the needs of the whole person. It is a system of care driven by direct feedback from Alaska Native people receiving services in the system -- referred to as customer-owners. And it is built on a foundation of long-term relationships, transfer of control to the customer-owner, integration of the mind, body and spirit, and a commitment to measurement and quality. This is SCF s Nuka System of Care. SCF is an Alaska Native nonprofit healthcare organization, established in 1982 by Cook Inlet Region, Inc., one of 12 Alaska Native regional corporations created by the Alaska Native Claims Settlement Act of SCF is an organization owned and managed by Alaska Native people. The Indian Self-Determination and Education Assistance Act of 1975 put Tribes at the center of the choice whether or not to assume ownership and management of programs previously operated and administered by the Bureau of Indian Affairs and Indian Health Service. Alaska Native people chose to take on this responsibility and became customer-owners of their own healthcare delivery system through Compact agreements with the U.S. government. Through these alliances, and the paradigm shift from professionals know best to customers know best and the commitment to a relationship-based delivery system, SCF has redefined what it means to achieve wellness through health and related services. The Nuka System of Care includes: Customer-ownership The customer-owner is in the driver s seat and voices needs and preferences through multiple feedback channels. Ownership is a shared responsibility. Relationships Operational Principles spell out R-E-L-A-T-I-O-N-S-H-I-P-S. By connecting with the same people at every visit, strong relationships can be formed with the teams that support you on your wellness journey. These teams get to know your values, goals, priorities and strengths. Whole-person wellness Promotes wellness beyond the absence of illness and prevention of disease. Addresses the physical, mental, emotional and spiritual dimensions of whole-person wellness. Reflecting the values of the community they serve, customer-owners have the option of allowing their families to accompany them during visits with their primary care provider team in talking rooms, which are like living rooms with comfortable seating and no exam tables. The team includes a primary care provider, an RN case manager (who assists with care coordination and referrals, medication refills and test results), a certified medical assistant (who checks blood pressure, weight and height) and a case management support person who helps coordinate future appointments and navigate through the primary care center. The integrated care team s members take pride in their ability to work together. Our community owns their healthcare system, says SCF President/CEO Dr. Katherine Gottlieb. Customer-owners become engaged by making personal behavioral choices on their journey of wellness. SCF providers stop seeing themselves as the heroes who are going to save the patient, who do things to and for people, Dr. Katherine Gottlieb explains. Instead, she says, they partner with customer-owners on their journey to wellness. Many other health professionals are integrated into the primary care setting that make up a customer-owner s wider integrated care team. For example, if customer-owners need to see a specialist, such as a nutritionist, behavioral health consultant or dietitian, these individuals rotate throughout the clinic teams to offer additional support to the customerowner. Other medical specialists, such as cardiologists, are available on referral the same day at the Alaska Native Medical Center. Clinical options also include a Traditional Healing Clinic, which is available on a referral basis and encouraged as a complement to western medical treatment. Strong and effective relationships are necessary across the organization to accomplish goals, objectives and work plans. Building a culture of trust, based on relationships, encourages shared decision-making and supports innovation and creativity. A three-day mandatory Core Concepts training, led by the president/ceo, helps employees understand how

15 Creating new value with patients, carers and communities 15 their relational styles impact others, how their experiences affect how they approach and build relationships, and how to articulate and respond to each story in everyday work and life. While SCF s employee and customer-owner satisfaction are well above national averages, the Nuka System of Care has reached a number of highly impressive outcomes since its inception in 1982: 50 percent reduction in emergency room and urgent care visits Cultural respect is 99.2 percent Three quarters of measures for illness prevention, screening, and chronic disease measurement are in the top 25 percent

16 16 Creating new value with patients, carers and communities 9. Are there measurement systems to support this? All of the practices described here need to be underpinned by the measurement and monitoring of patient experience. This has greater impact and creates greater value if it can be collected and utilized in real time. This information needs to be collected on a number of dimensions including: Perceived humanity of care Pain and dignity Patient reported outcomes Complaints, comments and complements. These need to be measured at different times (humanity and dignity in real time or shortly after, outcomes at a later point). Satisfaction is now seen as an inadequate way of capturing information and prone to a number of biases, the patient s actual experience provides richer and more actionable information. A range of qualitative and quantitative methods are required ranging from individual patient stories and interviews through to real-time data capture through electronic devices. It is important that these are not treated as a set of add ons to the real data system. Patient experience and involvement needs to be embedded in the quality framework of organizations and woven through Board strategy, contractual arrangements, staff training, individual performance targets, etc. Executive and clinical leadership that can create a culture where patient experience is continually improved and where concerns and complaints are welcomed and learned from, needs to be in place. The Board should be aware of the complaints and key quality concerns within the organization and the actions being undertaken to address these. A key point is that data created by clinical teams needs to be fed back rapidly with support in identifying trends and solutions. For payers and life science organizations the lessons are the same what has been focused on may not be what is of most importance to patients, what has been measured may not be what really matters, and rich data about how patients actually experience care is vital.

17 Creating new value with patients, carers and communities 17 The example below of iwantgreatcare, demonstrates patients by using a technologically based feedback system i Want Great Care (UK) can provide speedy feedback to healthcare organizations and their staff. iwantgreatcare bills itself the TripAdvisor of health, collecting information from patients about the quality of care they receive from their doctor or other healthcare professional. Since its launch in 2008, it has grown to be the largest online repository of patient experience feedback in the UK. More than 80,000 reviews a month are being added to the 800,000 already stored on the website. A scoring system, using objective criteria derived from the patient satisfaction evidence base, allows iwantgreatcare users to rate and compare care experiences in areas such as trust and listening ability, as well as to indicate how highly they recommend their doctor. The number and nature of providers covered by iwantgreatcare has grown steadily since launch. In 2010 the service was extended to cover dental patients and the following year national pharmacy chain Lloyds announced that it would enable its customers to give real-time feedback on their in-branch experience. Other partnerships have included a customer experience pilot with international renal care provider Diaverum and a unique service for the Terence Higgins Trust to help HIV patients identify sympathetic healthcare professionals. Following the UK Government s announcement of the NHS Friends and Family Test in April 2013, iwantgreatcare offered to provide the infrastructure for NHS Trusts to capture the patient experience data prescribed by the new legislation. The system will also be used to allow patients to rate the care they receive from their GP when the Friends and Family Test is rolled out to cover primary care in December users rate and compare care experiences in areas such as trust and listening ability, as well as to indicate how highly they recommend their doctor.

18 18 Creating new value with patients, carers and communities Preparing to change It s time to use patient power and involve families and communities and work with them to improve value, safety and quality and potentially to reduce costs.

19 Creating new value with patients, carers and communities 19 What needs to be done: At the core of our argument is changing the way in which healthcare works with patients in order to ensure they are more active in their own healthcare. We believe that the economic argument for this is clear. Here we outline four next steps to take in realizing the extra value that patients can contribute. 1. Since we want to increase patient activation make every interaction with patients count Healthcare spends most of its resource in developing its interaction with patients. If we want to increase patients activity we need to review all of these interactions to ensure that each of them increases the capacity of patients to be more active in their own healthcare. At the end of a consultation does the patient always leave with greater skills to self-manage than they had at the beginning of that consultation? Does every letter, or phone call leave them with greater capacity to know what they have to do next? Are you checking up that these attempts at improving patient capacity actually work with the patients and are not just empty instructions from medical professionals that have no impact on behavior? 2. If you want to allow patients to add value to their own healthcare make sure the healthcare is designed with them in mind Successful industries that encourage consumers to create value design their products with those that consume them. Healthcare needs to fully involve patients their carers and communities in all healthcare redesign. Our research shows that few patient organizations think that happens at the moment. 3. Develop your workforce to search for and realize assets in patients their carers and their communities. The practice of most medical professionals is based upon seeing patients as a set of deficits. For medical professionals to recognize the possibilities of self-management and to see patients, their families and their communities as a set of assets is a departure from the deficit model. One of the best ways of developing the workforce in this direction is to use individual or groups of expert patients to carry out that development. The workforce will also need new technical skills to work with, a number of tools such as decision aids, telehealth and other self-care technology and with real-time information about patient experience. All of the components need to be built into recruitment, induction, appraisal and reward strategies. 4. Payment systems will need to be reorganized to recognize the value creating possibilities of patients, their carers and the communities Compared to most medical interventions, the investment in better patient self-management is not expensive. But it still calls for some resource. If the payment system is organized in such a way as to see selfmanagement as just another form of episodic cost, then it is difficult to see where the return on this investment comes from. If however, the payment system is organized to cover an entire patient pathway or population, the return on the investment in better patient self-management is potentially significant. Last word It s time to use patient power and involve families and communities and work with them to improve value, safety and quality and potentially to reduce costs. New skills, technology and approaches are required to do this. Being able to do this will be a differentiating factor for payers, providers and life science companies. But, apart from that it is the right thing to do.

20 20 Creating new value with patients, carers and communities KPMG Maturity Matrix Throughout this argument we have been providing answers to the nine different questions that are at the core of greater involvement of patients in the creation of value in their own healthcare. While the actions that follow from each answer is important, it is important to bring these answers together into an overarching plan for greater patient involvement in their own healthcare. The following a maturity matrix for a healthcare organization describes how the answers to the nine key questions can grow together into an overall and coherent plan for transformation. Answering each question is not necessary. But answering them together will ensure that your organization has the opportunity to create much more patient created value. If you have any questions about the matrix, or your self-assessment, please contact any one of our professionals listed on the back cover Work to create a new culture centered on the patient culture Absolute focus on patient involvement & experience at all leadership level Some focus on patient involvement and experience Key principles for patient engagement enacted & communicated Strong narrative about what good patient experience looks like Recognition that there needs to be a narrative about patient experience and outcomes and some work carried out on it No focus on patient involvement and outcomes Patient input into service design Sophisticated methods for understanding patient experience and preferences are in regular use Patients involved in most service design Patients beginning to be involved in some service design Some pilots of patient involvement in service design Recognition that patients should be involved in service design and some contact with patients to achieve this Patients not involved in design at all Systems to support shared decision making Patients are offered coaching, decision aids and other support to be involved in all decisions making. No decision about me without me Routine advanced planning including escalation and end of life Shared decision making is standard Some pilots for shared decision making Recognition that shared decision making with patients produces better decisions and creates more value and the beginnings of a plan to implement that No shared decision making taking place Models support self-care and help the professionals adapt All medical staff are part of models of care that support self-care Models of care are developed which are based upon a high level of measured patient activation with increasing patient social independence Models of care are developed which need peer support networks and tools for self-management routinely available for patients Some pilots that develop new models of healthcare that need retraining of medical staff to foreground improving patient care Recognition that existing models of care may limit the ability of patients to self-manage and an exploration of the possibilities of different models No recognition of the way in which existing models of healthcare limit the ability of patients to self-manage Are patients assets mobilized Patients recognized as value creators by the organization and the Board, and their assets are invested in such The Board systematically audits patients assets as potentially adding value to patients healthcare Medical professionals lead the investment in patients assets across several care pathways Some pilots which audit the patient assets that are available to add value to healthcare Recognition that patients have assets that can contribute to healthcare value creation and that investment in those assets can gather returns Patients are seen as lacking in assets to contribute to their own healthcare

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